Clinical Breast Cancer Registry of IR. Iran (CBCR-IR): Study Protocol and First Results

Author:

Seyyedsalehi Monireh Sadat12ORCID,Nahvijou Azin2,Haghjooy Javanmard Shaghayegh3,Vand Rajabpour Mojtaba2,Manteghinejad Amirreza4,Pirnejad Habibollah56,Niazkhani Zahra7,Golpazir Sorkheh Arash8,Baniamer Maryam9,Anasari Jamshid10,Bahrami Masoud11,Marzban Maryam1213,Esfandiari Atefeh14,Ghoreishi Seyedeh Masoumeh15,Nikbakhsh Novin16,Baharvand Iran Nia Yahya17,Ahmadi Somaghian Shahram18,Ashoobi Mohammad Taghi1920,Bakhshi Fataneh21,Ansari-Moghaddam Alireza22,Bakhshi Mahdieh22,Moradi Binabaj Maryam23,Nourmohammadi Hassan24,Omranipour Ramesh25,Zendehdel Kazem226ORCID

Affiliation:

1. Department of Medical and Surgical Sciences, University of Bologna, Italy

2. Cancer Research Centre, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran

3. Applied Physiology Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Science, Isfahan, Iran

4. Cancer Prevention Research Center, Omid Hospital, Isfahan University of Medical Sciences, Isfahan, Iran

5. Patient Safety Research Center, Clinical Research Institute, Urmia University of Medical Sciences, Urmia, Iran

6. Erasmus School of Health Policy & Management (ESHPM), Erasmus University Rotterdam, Rotterdam, The Netherlands

7. Nephrology and kidney Transplant Research Center, Clinical Research Institute, Urmia University of Medical Sciences, Urmia, Iran

8. Department of Surgery, School of Medicine, Kermanshah University of Medical Sciences, Kermanshah, Iran

9. Department of Chemical Engineering, Amirkabir University of Technology (Tehran Polytechnic), Tehran, Iran

10. Depertment of Radiation Oncology, Arak University of Medical Sciences, Arak, Iran

11. Arak University of Medical Sciences, Arak, Iran

12. Clinical Research Development Center, The Persian Gulf Martyrs, Bushehr University of Medical Science, Bushehr, Iran

13. Statistical Genetics Lab, QIMR Berghofer Medical Research Institute, Brisbane, QLD, Australia

14. Department of Health Policy and Management, School of Medicine, Bushehr University of Medical Sciences, Bushehr, Iran

15. Cellular and Molecular Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran

16. Cancer Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran

17. Department of Internal Medicine, Lorestan University of Medical Sciences, Khorramabad, Iran

18. Shahid Rahimi Hospital, Lorestan University of Medical Sciences, Khorramabad, Iran

19. Razi Clinical Research Development Unit, Guilan University of Medical Sciences, Rasht, Iran

20. Guilan Road Trauma Research Center, Guilan University of Medical Sciences, Rasht, Iran

21. Social Determinants of Health Research Center, School of Health, Guilan University of Medical Sciences, Rasht, Iran

22. Health Promotion Research Center, Zahedan University of Medical sciences, Zahedan, Iran

23. Non-Communicable Diseases Research Center, Sabzevar University of Medical Sciences, Sabzevar, Iran

24. Department of Internal Medicine Shahid Mostafa Khomeini Hospital, Ilam, Iran

25. Department of Surgical Oncology, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran

26. Cancer Biology Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran

Abstract

Background: Breast cancer (BC), as a significant global health problem, is the most common cancer in women. Despite the importance of clinical cancer registries in improving the quality of cancer care and cancer research, there are few reports on them from low- and middle-income countries. We established a multicenter clinical breast cancer registry in Iran (CBCR-IR) to collect data on BC cases, the pattern of care, and the quality-of-care indicators in different hospitals across the country. Methods: We established a clinical cancer registry in 12 provinces of Iran. We defined the organizational structure, developed minimal data sets and data dictionaries, verified data sources and registration processes, and developed the necessary registry software. During this registry, we studied the clinical characteristics and outcomes of patients with cancer who were admitted from 2014 onwards. Results: We registered 13086 BC cases (7874 eligible cases) between 1.1.2014 and 1.1.2022. Core needle biopsy from the tumor (61.25%) and diagnostic mammography (68.78%) were the two most commonly used diagnostic methods. Stage distribution was 2.03% carcinoma in situ, 12% stage I, 44.65% stage II, 21.32% stage III, and 4.61% stage IV; stage information was missing in 1532 patients (19.46%). Surgery (95.01%) and chemotherapy (79.65%) were the most common treatments for all patients. Conclusion: The information provided by this registry can be used to evaluate and improve the quality of care for BC patients. It will be scaled up to the national level as an important resource for measuring quality of care and conducting clinical cancer research in Iran.

Publisher

Maad Rayan Publishing Company

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